Living with dementia magazine June 2010

Family ties

When Ian Brady developed dementia aged 56, his family didn't know which way to turn. For the last three years, his sons, sister and nephew have been muddling through to ensure Ian is well cared for and happy, though it hasn't been easy.

John, 32, eldest son

'The first year we found out about dad's dementia was incredibly difficult. I'd get frustrated when he wasn't doing things he'd always do, and no one knew what was going on.

It was such a relief when we found out the diagnosis. But finding support has been hard. Dementia isn't just something you get when you're 85, and services for younger people with dementia are virtually non-existent.

Everyone is doing what they can but we all have commitments. I'm married with two children and work full-time, but we see a lot of dad at weekends and involve him in everything we do.

Sometimes you forget how he used to be, but we still have him, and you just want to make the most of what you've got when you've got it.'

Martin, 30, middle son

'I didn't used to have a very good relationship with dad, so I wasn't involved at first in helping out, but eventually I just bit the bullet and got on with it.

I think what I've found most difficult about the situation is the feeling of the unknown, of trying to prepare for tomorrow but not knowing what tomorrow's going to bring. In the last two years there's been quite a rapid deterioration from dad being socially interactive to no longer being able to join in conversations.

Fortunately, we all live close by and everyone muscles in. We used to have a rota, but as dad's dementia has progressed and personal hygiene became an issue, we decided to get a live-in carer, Val, who moved in last month. We're not admitting defeat but we need more support than we're able to offer ourselves now.

One of the positives that have come out of this is that we all spend a lot of time together now. Dad's massively into sport so we take him out at weekends as much as possible and watch sport together. We've never been closer.'

Stuart, 28, youngest son

'I moved in with dad in 2009 but had to move back to London recently to finish my studies. When we lived together, I'd dress and undress him, put him to bed, and then get him up before I went to college. We had a routine and all took it in turns to cook in the evening.

I find getting the balance right difficult in terms of having time to yourself and doing enough for dad. I'm studying for a law conversion course and want to become a barrister which is a very difficult thing to do. All the time I was working on the computer I was aware dad needed occupying and I didn't have time to be as accommodating as I wanted to be.

Moving to London was a difficult decision to make because you feel selfish, but we had Val in the pipeline thankfully and it's been a big relief having him on board. The big worry is the situation changing again, so we've had a look at some care homes locally just to be prepared.'

Eileen, 56, Ian's sister

'It's been very hard coming to terms with the situation. I changed my hours at work so I could come in and shower and shave Ian and get him dressed and give him his medication, but we found him eating raw sausages one day and things like that obviously cause us to worry.

I worry about the future as I don't know what it will hold. The most important thing for us all is ensuring he's happy.'

Patrick, 17, Ian's nephew

'Thursday is my day with Ian. I only live over the road so I'll go round to his house and we'll go into Hertford and buy something for dinner. He knows a lot of people from playing sport and he still recognises people.

When we're walking through town every second person says, 'Hi'. Sometimes he forgets his keys and he'll ring me and I'll let him in or he'll come back to my house, so it helps that we live close by.

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